A repost from Silke Helfrich at the German Commonsblog.
“Access to Pathology Expertise: How can we turn this luxury into a global commons? This is the question asked by Jacques Paysan from Carl Zeiss MicroImaging GmbH during the World Commons Forum held in Salzburg on September 29/30.
The success of medical treatment crucially depends on accurate diagnosis by an experienced pathologist. This is particularly true for tumour surgery, transplantation medicine, and diagnosis of infections. In a nutshell: No diagnosis, no therapy!
Just imagine: You have something you don’t understand. Nor your doctor does. So, …he makes a biopsy and sends it to a pathologist to find out if it’s benign or malign. Imagine how you feel the days you are forced to wait for your diagnosis.
For patients, access to pathology expertise can be a matter of life and death and it often has profound impact onto their prognosis and quality of life. Access to such expertise (still) seems normal to us in Europe, but for numerous patients, it is anything else than granted.
Professor Agostino Faravelli, who runs a great organization, patologioltrefrontiera (Pathology beyond borders), shares a frightening story with the stunned audience of the World Commons Forum:
„A doctor in Zambia told me: when a patient comes to me with swollen lymph nodes, I cannot know why. Nor can I find it out. So, I normally give him a medicament against TBC. If he recovers, it was TBC. If he dies it wasn’t.“
Those are the kind of stories, which motivated Professor Agostino to commit with patologi oltre frontiera.
Despite its fundamental importance, access to pathology is a luxury. In many regions of the world only a few or even no pathologists at all are available for millions of people, and even in highly developed countries “pathologists are an endangered species”.
For instance Tanzania: there live 30 million people. The country has 9 (!) pathologists. In Congo, there is the same number of pathologists for 70 million people (!). For comparison: Italy with 60 million inhabitants has 2,500 pathologists and Germany with 82 millions has about 1,500.
So, most of the diagnosis, which is indispensable to chose adequate therapy, is simply not done.
„Future Generations might be the victims of what we do wrong today, but large parts of the present generations are victims of what we don’t do today.“, says Jacques Paysan.
It is evident, that the private sector alone will not resolve the problem.
„We can build microscopes, but we cannot build pathologists.“
And he adds:
„We have cases (i.e. thousands and thousands of patients), we have the technology (microscopes), but we have no pathologists in many regions of the world. Even in Europe pathologists are an endangered species. What we do have is the internet“
Indeed, education for pathologists in their respective countries is urgently needed, but also telepathology can help to ease this problem. Actually, the approach of „patologi oltre frontiera“ combines telepathology and education.
It is evident, that the commitment of an OSC like patologi oltre frontiera will not be enough, not even in cooperation with companies. What are needed are political support and – above all – a shift in thinking.
I think to conceive pathology-diagnosis as a global commons will help to put things on the right track.
What does that mean? Pool the resources (knowledge i.e. the expertise of the „endangered species“, technologies and bandwidth) and share them. This is exactly what patologi oltre frontiera tries to do, but public awareness as well as support from global Health Organizations are urgently needed as well. (WHO? Who exactly?)
* Pathology expertise is inherited from generations of pathologists, who contributed to this expertise (it has been built collectively and therefore should be shared and it has to be rewarded adequately for any individual pathologists – the work they do is just incredible and the training they need to do the work as well)
* Pathology knowledge is improved by sharing it, and sharing it is a matter of fairness and also a matter of Human Rights
* Accurate medical diagnosis (and thus pathology) is essential to our quality of life – as all commons are
* The technology (remote microscopy, digital slides, internet) that helps to make pathology expertise accessible everywhere exists, but it takes global efforts to implement it – it’s all about fairer access to the few available resources in that field.
To convert pathology-diagnosis-capacity into a global commons, broadband internet connection is needed, and the necessary infrastructure to transmit information has to be built up. Digital slides can be very large (hundreds of MB or even hundreds of GB). However, since technologies similar to Google Earth are used to visualize these images (you don’t have to download the entire earth for peeking from satellite perspective onto your house), broadband connections as common in Europe are usually sufficient.
Perhaps some kind of digital siren and flashing red-light to give priority to medically relevant image data on the information highway would help (as we grant it for an ambulance on the motorway). Hundreds of such systems are already implemented in developed countries and you can test the technology yourself: e.g. here.
So why shouldn’t this be possible, given the political will and generating cooperation among the pathologist-community, the microscope producing companies (even those who compete), the digital-commoners and some crucial political actors? Why not build – right now – a global infrastructure for data sharing for this kind of life saving uses? If it is possible to fly to the moon or to put finally the fibre optic undersea cable which connects African countries to the internet, why shouldn’t it be possible to build the infrastructure to pool pathologist’s expertise?
For me, Agostino Faravelli is a true commoner. But the truth is that he just heard talking about the Commons for the first time during the World Commons Forum. Even thought, what he does every day is, in my view, contribute to the construction of a new global telepathology commons!
Here is a 36 seconds cartoon summary:
The audience in Salzburg gave a wonderful feed-back:
* „next level health care“
* get your hardware manufacturer to Open Source their hardware/software to allow a community build software for you
allow a technical community to write software for you.
* model for sharing knowledge via telecommunication in other fields
* thanks for showing us, what a difference a real global commons project makes!
It would be interesting to get the project in touch with open medicine initiatives, the Health Commons Project and many others, to get their feed-back.